Building my life after the devastating effects of Necrotizing Fasciitis
(The Flesh Eating Bacteria)

Tuesday, January 27, 2015

Actually, I do need you... for prayers.

I finally went onto the internet to find out what others are saying about withdrawal from Fentanyl. It's all there... everything. The loss of appetite, hair falling out, and most telling of all... INSOMNIA and RLS.

Many people reported terrible insomnia. That is where I am now. It is almost impossible to live with, but I am. I am praying and praying that it will end soon. But then I have only to look forward to going down another dose of Fentanyl and doing it all over again. It is hell, I gotta say. Not sleeping properly is hell. I am dizzying tired all day. The world is one big blur. I am only going down by little doses, and it is so hard. I am now at 44mcg. I have to get off this poison!! At this point, it is a little imprecise how much of the medicine is getting in me- I am cutting patches. I have a 50mmg patch which I have divided into about 8 sections so I can take off 6mmg at a time. I made a guide of a piece of cardboard which I use to cut the patch each time, but I never really know how precise it really is. It is as precise as I can do it, though. This was the doctor's advice.

During the day the tiredness is unrelenting. I am going to start these energy shots and see if they help. I got a lot of them when my brothers came from America for the BatMitzvah. It is time to start them, I have to do it at a certain point every day in order for it to be effective. My head is so blurry, I sometimes think I shouldn't be behind the wheel of a car. I don't have anyone else to do it, though. I am careful, and wouldn't drive if I really felt awful (I have, in the past, asked friends to drive a child here or there if I felt it wasn't safe for me to drive). I truly wish I had someone to work for me to do the driving. But, I don't, and I will make it through this. I have made it through harder things.

I realize I don't need a sleep clinic done, I just need to get this Fentanyl out of my system. It takes a long time, from what I am learning. The drug stores up in your fat cells, so it takes a very long time to seep out. People recommend going to saunas- dry heat. I'd love to.... I'd love to swim sometimes, too, but I don't have that luxury. There is a gym with a pool tauntingly nearby, but no way is that in our budget these days. Also I think it is not recommended for people who have lymph edema.

I gotta slog through it like anyone would have to. No breaks here.

Makes me wonder if I should even deal with going onto the Cannabis. I don't want any drugs in me. My pain is actually *better* since I have been withdrawing from the Fentanyl. There is always an initial few days of heightened pain (always in my hips, but just one at a time, not both at the same time. Interesting, right? They both have different issues that cause pain, so different nerves are triggered at different stages of drug withdrawal. Who'da thunk?) So the heightened pain lasts three to four days. I can deal with it, it's not too much pain for me. But the insomnia... that is close to unbearable. My kids need me afternoons. Thank Gd I only have two home during the week this year- my older boys are learning outside of Be'er Sheva in different yeshivas and come home on Shabbats. But having to take care of anyone besides myself *at all* is heavy for me in this condition.

Pray for me that I can endure all this. Each lower dose comes with more of this sh*t. My doc says to lower it every two weeks. That is about 6 more times. That's a lot.

Don't count, Sarah, just do it.

I am asking for your prayers for my strength to get through this.

Sarah Rachel Bat Tova.

(Meanwhile, I have thankfulness for the good in my life. The other aspects of my life- my family- are doing awesomely. My kids, thank Gd, are excelling in their own ways. Nobody is in crises, everyone is in the right place at the right time. It is really an awesome time for us, Robert & I have talked about it. I want to write more about my kids and what they are accomplishing and who they are. Maybe when I get out of my own skin enough, I can tell you more. But, thank Gd, the family is doing well. Thank the Good Lord.)

17 comments
:

Less than a year ago you were at 100. i went and looked it up. Once in a while if you look behind you and see the incredible amount of distance you have covered, maybe it will give you that push. It's like when you coach women in the hardest parts of labor who say "i can't do it, i can't do it" and you say "but you can, because you're already doing it".You can. You're already doing it.

Yup. Seems that I know so much about birthing and contractions, but I never use it for myself. "Doctor, heal thyself"... it's an irony, that as much as I know about pain and hard physical work for a specific goal, I never apply it to myself. I just have to keep the big picture in mind. I *will* be off Fentanyl. B'ezrat Hashem.Thanks for your support!

think it is like looking at a painting. When you're 'in' it, you cannot possibly see it. That's why you have friends, to remind you.I was also wondering if it is true that each time you will take off a dosage it will be exactly like this. There is just no way to know - also like births...Keep strong. I believe in you. Xxxx

Sleep deprivation is so so hard. I'm going to start the process of going off my sleep med and see how it goes. I know how not sleeping is almost painful in its own way. You will get through it. You know that each time you drop the meds it gets better. You've been way more sleep deprived before. You are going to do this.

About me and the blog

This blog is about the hard stuff that has happened to me since I got sick... very sick, in 2007. When you read it, please know also that there is lots and lots of GOOD, amazing, miraculous things in my life. I need this blog, however, to get out the hard stuff.
That hard stuff started out with a simple run-of-the-mill surgical procedure to fix a small hernia I had. I was completely healthy before that. Four days after the operation, I was readmitted to the hospital in tremendous pain. Nobody knew what was wrong, some nurses didn't even believe my pain was that bad. Tests were done, nothing was noticed. A few days later I was taken in for an exploratory surgery to see if the source of the problem could be identified.
The next thing I knew after going under for the exploratory surgery was that I woke up many days later, from a coma, completely unable to move my body or communicate.
I slowly learned that I almost died from the “flesh eating bacteria”, Necrotizing Fasciitis. I had suffered tremendous bodily damage, but survived.
From that point on, my life has been taken over by medical problems, more diseases, many more surgeries and so much pain.
When asked what I do, I say I am no longer able to work, but I am an orchestra musician, I play french horn, and I am a birth doula. Since 2008, however, I have not been able to work.
I am blessed to be able to raise my four beautiful children and continue life with my loving husband, Robert. That is indeed my life's work. When I got sick, I was 39, and my kids ranged in age from 1 + ½ to 7. It has been an amazing, tremendously difficult journey we have all been on. I invite you to randomly read blog entries from this blog, as well as the CaringBridge blog, which can be found on a button under this write-up.
I appreciate all your letters and feedback either personally or on my blog. The support and encouragement I feel from my readers is the fuel for my writing. I thank you for joining my journey!

Contact me directly

Networked Blogs

my blog is also here

"footbridge", by Ruth Gresser

Getting from one side to the other is where we find the colorful part of living...

People, Places & Things

Robert= husband, friend, anchor, ezer k'negdo.

Dov= oldest child, boy variety

Ya'akov= 2nd child, also boy variety

Shifra= 3rd child, girl variety

Azriel (Wazi)= 4th child, again, boy variety

Emma= my dog. We adopted her while she was pregnant (how else does a dog get to Sarah?), she had her 7 puppies here in our garden, we raised them for 3 months, and then one-by-one gave them away to new homes. We have Emma with us now, a dearly beloved part of our family.

Gapey= the large (26cm x 13cm, or 11in. x 6in.) wound on my left upper thigh/lower belly/groin after the debridement surgery took out all skin layers, parts of muscle & ligament

Scrapey= the other wound; the area all around my right thigh where the skin was taken in rectangular patches for the graft which was used to close gapey.

Shapey= the odd shape on my left outer thigh which was caused by the cellulitis infection (March 2008). It is still damaged looking, and remains sore to the touch